MARCH 1, 2013 | Having Everything and Losing Everything, Much Too Early - Memory Ball
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MARCH 1, 2013 | Having Everything and Losing Everything, Much Too Early

MARCH 1, 2013 | Having Everything and Losing Everything, Much Too Early

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Having Everything and Losing Everything,
Much Too Early

by Carolyn Poirier

Alzheimer’s disease has been a part of my life for over a decade. It has taken the lives of many people close to me, in a long and painful way.  The difference between this disease and any other terminal illness, is that the person is physically alive for many years after you’ve lost them; that I believe to be the hardest reality for the caregivers and family members. My grandfather was diagnosed first, and was my first real exposure to the disease. To me (at age 12) he was just a forgetful sweet old man, who over time became more and more disengaged. He was physically around for 5 years after the diagnosis but passed away before my final year in high school. His case was one of the kinder ones, relatively quick and his calm and happy personality shone through until the end.

A couple years later, my mother, Jane, in her early 50s, started exhibiting symptoms. At first it was a personality shift, problems driving and then deteriorating work quality. Her prominent public relations firm, Lewis Carroll Communications, which at one point in time handled large international accounts, including Vincor International, PMA, Tridel, and Virgin, slipped through her fingers. Her clients must have noticed her performance faltering. The formal diagnosis came a year later, and was met with a depression unlike anything else. The reality was; she knew what was going to happen to her, she had just seen her father-in-law go this way, and she knew there was no cure. It wasn’t a terminal sentence that gives the opportunity for closure, or where patients spend their last month’s basking in the sun and enjoying the company of those around them. She would live in denial for the first year, and then it would be too late for goodbyes, she would just fade out.

I was very angry and resentful when the disease started to take effect; why couldn’t she remember me or details of my life? The list of things she’s no longer capable of grows every day, and includes bathroom habits, eating, dressing, reading, writing… these items seem insignificant to me now. It’s been a year and a half since she understood I’m her daughter, and as sad as it is to say, I’m more comfortable with that.

The hardest part for me and my family is seeing her be constantly scared. In my mind she is a little girl, who needs protection and constant love.  I see the frustration and fear in her eyes and it breaks my heart. For someone who was smart and outgoing to become so reserved, shy and sad, is really hard to comprehend.  The next few months for Jane bring even more challenges, as she likely will be in a “home” by the end of 2013. She’ll be surrounded by other Alzheimer’s patients, who will be 20-30 years her senior.

Memory Ball was founded in part to pay tribute to her in the most fitting of ways, through a big party with dancing and an open wine bar (her favourite things). Memory Ball is my way of doing something positive, when there is nothing else proactive to be done for my mum. The realities of this are harsh, and the hopelessness gets the better of me sometimes. The key to surviving with this disease is your support system, and through an email I sent to 25 people, asking for input on an Alzheimer’s event, (Memory Ball) I was able to build one.

I miss her very much, and wish she was around to see what a success Memory Ball has become. She would have been exceptionally proud of each of the women on the committee, (with special mention to our Marketing Director, Kat, whom she mentored in her last working years).

My twenties have been altered dramatically, because of this disease, we [my family] live day to day. There are silver linings, I have become very close to my sister [Claire] and father. Claire and I constantly lean on each other for support and have a really good relationship. Our five year age difference seems insignificant now as we are faced with constant challenges at home. Furthermore, I have gained a sense of perspective and responsibility many twenty-somethings won’t inherit for over 20 years.

For those of you who haven’t lost anyone in this way, take a few minutes to talk to your grandparents and parents. Ask them about their twenties, what they want from life, anything, do things to make memories, because for me,  not getting to know my mum first hand, will be my biggest regret.

3 Comments
  • Linda Perlis
    Posted at 20:36h, 01 March

    Carolyn:
    This is so moving and heartfelt. My mom died at 47- but at least i could grieve for her – and I can’t imagine what it must feel like to “have her” but not “have her”. I think about you and your family a lot and we will be there at the Memory Ball lending our support in that small way.
    Love, Linda

  • Lynda Allison
    Posted at 15:50h, 02 March

    Dear Carolyn,your article is so moving-I feel your pain.If I may assist you in any way, I hope you will let me know. I have a very good friend with this illness and your article has given me some comfort-I intend to share your article with my friends and her sister.

    David and I will not be able to make the ball this year but as you may know I am going to donate 2 necklaces that I make for the silent auction.I wish you every success with the Memory Ball and hope to see you soon.Take good care of yourself Carolyn,with love,Lynda

  • Jacqueline Boland
    Posted at 03:59h, 06 March

    Hi Carolyn,
    It’s your Dad’s cousin. I’m proud of you for taking such a painful experience and finding a way to channel that anger/confusion into something so positive and benevolent. My father was diagnosed just around the time that I got engaged to my husband. One of his greatest fears at that time (I found out later) was that he wouldn’t be able to walk me down the aisle or speak at my wedding. He did speak (with my Mom’s help), but very soon after that lost the ability to do so for himself. He never got to meet his grandchildren. He was like a little child following my Mom around near the end.
    I also know now how hard I was on my Mom at the time. I was in a fair bit of denial for quite a while and didn’t understand what she was going through. Sadly by the time I realized it, the support she was giving had taken its toll on her heart. My biggest regret is that I wasn’t more proactive in getting him to a home, for both his and my Mom’s sake. When Mom’s health suffered and we had to put him into the first place available, it was awful. I should have pushed her to do it sooner when better options were available, but she wanted to stay with him as long as she could.
    As you know, she is now going through her own version of Alzheimer’s, though like a true Poirier she’s been fighting it and surprising us all as of late. I can’t imagine what her early days were like, knowing what she was facing after watching her husband and then her brother going through it. On my own side, I understand firsthand how heartbreaking it is the first time your own parent doesn’t remember your birthday, then your name, then you. I think the hardest time is the point when they are so mad and they fight you because they don’t want to believe that this is happening to them. The logical part of me understands the process, especially on my second run through, but the days where I got the “How could you do this to me Jacqueline?” tore at my heart. Mom is in a peaceful and accepting spot right now, but there are still days where I have to explain to her that she can’t walk anymore or that her brother died some years ago and watch the pain of that loss go through her all over again.
    It’s an awful disease, and one that I’m terrified of for myself. I’ve watched both my parents go through it and wonder when, more than if, it will start for me. As an older mom with young kids I worry with every small forgetful moment that this is the beginning of the end for me. That I won’t know my own children as they grow. That must have been so hard for your Mom. It is what I am most terrified of.
    I’m so proud of you for doing this good work. We will be making a donation to your ball and your cause.
    Love you,
    Jacqueline

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